(Original title – The Very Secret Diary)

I posted an entry earlier responding to an article that was written on Thursday and published via Junkee, an online “news” source. Mostly they post pop-culture articles and memes. But they posted an article about a 24-year-old woman who was diagnosed with Stage 1 breast cancer with a BRCA 1 gene mutation last year and had a preventative double-mastectomy instead of just a lumpectomy. She spoke of how her whole life turned upside-down and she stared death in the face and won (not her actual words, but that was what I carried away from it by the end of the article).

This is the article.

And this was my response.

Go on, take a minute to read and come back.

I called bullshit, because she was Stage 1. I don’t deny that it wasn’t in many ways harrowing for her. But she was never close to death. Stages 0 and 1 of breast cancer have an almost 100% survival rate. The likelihood of her staring death in the face was slim to none, even with the unfortunate gene mutation that makes her more susceptible to breast and ovarian cancer. The fact that there is such thing as a Stage 0 of breast cancer shows you just how effective the awareness campaign around symptoms is, and the issue of overdiagnosis of the disease as a result.

I don’t mean to or intend to minimise or discount her experience, and cancer is not a competition, but holy shit have some perspective. If she had asked the question of her oncologist or surgeon, the big “am I going to die” question, they would have told her no, that it was highly unlikely. For her to prattle on about how awful it was for her to have to put her life on hold (temporarily) is in so many ways offensive and tone deaf to those of us who will die from the disease.

I have known, ever since I was going through the diagnostic process in the lead up to October last year that October this year (and indeed, every year following) was going to be hard. Everything is breast cancer pink for charity, but I hadn’t expected the emotional toll that it would take on me, having my internetting fill up with articles about women who are #warriors and #bravely dodged the cancer bullet of their oh-so-threatening Stage 1 cancer.

I don’t have Stage 1 cancer, but I did do a little reading. The two things I took away from my research was that there is an almost 100% survival rate, and the treatment is surgery, radiation, and maybe hormone therapy (if it’s hormone positive, like mine is). No chemo. No losing your hair and your femininity. No watching your eyelashes fall out. No watching your eyebrows disappear from your face. No constant nausea, no thoughts about how poison is literally flowing through you to kill cancer and other fast-growing cells. No risk to your fertility.

I don’t know what it’s like to undergo a radical double mastectomy, even though for comfort-sake I am still hoping it’s on the table. I reserve my right to change my opinion a thousand times between then and now should it happen.

I can take a lot, but I can’t take these articles. These articles and their accompanying photos of attractive, slim, women with their full heads of hair that weren’t touched by chemotherapy. These women whose bodies aren’t bloated from menopause and treatment and poor food choices and resting too much. Maybe there’s a photo of them adjusting a headscarf on their head of hair. Always a full-body shot. Always a serious expression, because cancer is a very serious disease. And always a smile, because they beat the bad cancer and can live their life again #blessed.

And in these articles, there are words and phrases that give some people the power to push through, but just plain piss me off.

I am not brave, I am simply doing what is allowed of me to do. I have the privilege of living in a large city, with a steady income, and access to medical care that is explained to me in an appropriate way. I am just doing this the only way I know how, and that is without a map to guide me, with a friend who helps to guide me through some things.

I am not redefining bravery. I am not a warrior, or a fighter. I do not have warpaint, or armour, or weapons. Also, calling me a warrior means something different when you remember that this disease will kill me in the end. I’ll just be a warrior that lost or didn’t fight hard enough, as if this was all something I could control.

I am not on a journey. Likening my experience to a journey is saying my final destination is death. Which it is. But still. Don’t. I don’t know what to call what I’m going through, but it’s definitely not a journey. I think it’s more of a wandering, sometimes with purpose, but mostly just going along and spending my time on the important things.

Most of all, I am not a survivor. I am surviving, but I am not a survivor. And I refuse to be reduced to these stereotypes just to make people feel better about how to describe me. I get it. People need these words to stay hopeful when they’re in my position. But they’re just words to me.

What I am, and what I know, is that I am strength. Some days that wavers, and there are days when I don’t do anything and I don’t feel anything and I don’t want anything. But I allow myself to have those days, those hours, those moments, because tomorrow is a different day and if I can pick myself back up again, I know I can push on for another ten minutes. I know that I am passion, and rage, and love, and anger, and loyalty, and friendship to those who deserve it, but all of that is exhausting.

I don’t know how to do this, I don’t know how people can help me, I don’t know anything about this whole trip down the garden path. I don’t know if you can tell, but this is me just pretending to know. I’m just trying to get the job done, while I can, because all of this fucking sucks and I wish I didn’t have to do it, but I do, so I do, and I will continue doing my best to live the best life I can in the unknown amount of time I have left.